Life with Epilepsy

I did not ask for this life but it is here, I did not ask for a child with this illness but I have him, I did not ask for this but it is ours. I wake up at night to the sounds of his seizure or hear it before I fall off to sleep, or as I am writing, doing business, cleaning, cooking, playing with the little ones or even when I am helping my son out, you see there is never a set time for these to happen, there is no time to prepare it could and has happened anywhere and at anytime.

Like at the beach on a family reunion, shopping, on vaccation, on a bus, in a bath tub, in a swiming pool, out for dinner, at a party and the list goes on and on, we never ever know when or what kind of seizure Matt is going to have.

Since Matt was 13 years old he was diagnosed with Epilepsy and in those 17 years that this has been our life we still are no closer to knowing when they will hit, what kind they are going to be or how long they would last.

We are also no closer to knowing when they will stop for good, a day, a week or even a year.

No with Epilepsy you just never know, it is a guessing game on how to help it, there is of course the pharmaceutical medication and we have tried them all, there is watching what you eat and eating low carb (we have done this and yes it works), eating more of a gluten free diet, there is cutting back on sweeteners, pop and caffeine and even stop cooking in the microwave, there is essential oils and Cannabis oil, there is also de-stressing which is so very important and even learning to be okay with who you are and where you are in this life.

Yes all of these have helped very much and we do get closer to that day or time in our life when we can be seizure free.

Every morning Matt wakes up is a new begining, this could be the day, the seizure last night could be the last one, even if it brought tears to my eyes and a saddness to my heart he is awake this morning and this could be the day the very best day. He is alive, he is talking, he is almost happy.

Today is a good day.

Matt has some tough times he doesnt realize how amazing he is and for all he has to go through that he is doing a good job, he would love to be an actor or own a Restaurant, be a writer or a cook but his mind gets lost with all he goes through and many times it takes him days, weeks and months to get him back on track and usually back to the begining of what he wants.

Our almost 30 year old son sometimes mentaly not older then 12 years old and other times even younger and yes sometimes older, sometime he is so angry he cant even think straight and other times so happy he is on top of the world and many times just numb or at least this is how it seems not knowing what to do and not wanting to do anything just sitting and having a difficult time with everything.

Epilepsy changed our whole life, changed my son, changed me, changed all of us.

There is never a normal or dull day, we never know what will happen or who we will be with this day, every day a surprise.

Matt could wake up on top of the world happy and excited and enjoying every moment and other days he is not even coherent unable to do anything himself, or angry and hating everything, We never know what will happen or what kind of day we will have.

Matt needs a full time care giver or at least someone to be with him, he can not cook for himself he would not cook it fully and eat raw meat not knowing it was not cooked although we have tryed to show him many times he forgets, he would over eat and eat till he was ill, he would forget to take his medication, he would eat way to fast and chook or forget to drink water, so many reasons he would not be able to be alone, he does not know what to do if there was a bad situation, he does not look for car when crossing the street, unsure about doing anything we have to remind him over and over again. He also can only follow one instruction at a time and still sometimes gets confused.

Yes not every day is like this and there are even days where we have to do less for him and there are days we have to do more for him we really have no idea and plans have to be changed at the last moment we really never know what will happen, vacations postponed or canceled, dates put on hold or rearranged, everything is on hold most of the time.

Mood's, illness, depression, headaches, seizures, disillusion's, fear's, anxiety, and the list goes on and on. We never know what will happen one moment to another moment.

There is nithing to prepare you for this, no courses to take to educate, no one to talk to about it, no one to watch him even if their was (excepted his sisters, my husband and me), no orginization will take him due to his seizures, there is no support or anyone to go to, there is only us, we are on our own, no extra funding, no extar benifits, no finacial add for any other medication. There is nothing except what we bring.

Having a child with disabilities is difficult enough having one who also has an illness like this is very difficult, especially with no support if any kind.

We didnt ask for this but to help our son we are going to try everything we can.

Dont give up ever.